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Pelagicdancer
Regular Member


Date Joined Jan 2013
Total Posts : 65
   Posted 4/20/2013 8:44 PM (GMT -7)   
Anyone here diagnosed with sleep apnea or suspect they have it? I really feel a lot of my problems come from not getting proper sleep. I have not been diagnosed with sleep apnea, I'm still (impatiently) waiting on a sleep study, but I strongly suspect I may have central sleep apnea (where the brain's respiratory control center is imbalanced during sleep, as opposed to the more well-known obstructive sleep apnea, which is caused by obstruction of the upper airway). I have had my brain waves measured during sleep and the results said that I am getting no slow-wave (deep) sleep, the restorative sleep phase needed for feeling rested, and that I wake up around 20 times a night. I also often notice a cycling of apnea/hyperpnea while I am awake. Really wish a Dr had sent me for a sleep study sooner!

I heard that a huge portion of people with fibro have sleep apnea and decreased blood oxygen levels, in fact some people have even speculated a theory that fibromyalgia IS a sleep diorder and that sleep disorder explains all the symptoms.

So what do you guys think? Do you have sleep apnea or other sleep or breathing problems? Have you been tested? How do you treat it? Anything I can do to help with sleep while I'm waiting for my sleep study?

I have very poor quality of sleep and I always wake up early, feeling totally exhausted, unrefreshed, depressed and in pain (feels like it's in my bones/joints in the a.m.). I have tried the usual sleeping pills (z-drugs, benzodiazepines, antihistamines) but none of them that I know of increase deep/slow-wave sleep except for Xyrem which no one would be willing to prescribe to me, it's only given for severe narcolepsy here. Also I'm wondering if it's unwise to take CNS depressants if I do have sleep apnea.

Help???

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12522
   Posted 4/21/2013 12:26 AM (GMT -7)   
Please don't take CNS depressant if you have sleep apnea especially central sleep apnea.

I have both types of sleep apnea CSA & OSA. Mine is considered severe because my CPAP pressure is 16 psi. I would stop breathing every 2 minutes during the test. After I got my machine I dreamed for the first time in a long time. :)

I was diagnosed several years ago with sleep apnea long before my fibro reared it's ugly head. Everytime I go to sleep I must put on my special mask that is hooked up to a pump called a CPAP. While I'm sleeping it keeps my airway open with constant air pressure.
It took a little adjusting to get used to it but it is a life saver. If you have sleep apnea and don't treat it you can have strokes, heart attacks, or die.

My BIL has sleep apnea and refuses to sleep with his pump. He has had a severe stroke and is paralyzed on his right side. Even after knowing his sleep apnea caused his stroke he still refuses to wear it because it was uncomfortable the 4 days he wore it. I'm scared my sister will be a widow again soon.

As for treating it now you may want to sleep on an incline to keep your throat open while you sleep. Don't sleep on your back either. It's only a temporary fix while you wait for your machine.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

almost medfree
Veteran Member


Date Joined Jan 2004
Total Posts : 1783
   Posted 4/21/2013 3:43 AM (GMT -7)   
Hi Pela,

I've been diagnosed with sleep apnea twice having after two separate sleep studies over the years. It is a good idea to get tested and what your pulmonologist will recommend afterwards if you are diagnosed as having it, is recommanding sleeping pills and a cpap machine.

I can't do sleeping pills, I am medication sensitive, so I try to get a good night's sleep by taking l-theanine and melatonin along with a benedryl for my allergies and tylenol for my pain. What's nice about taking these is I can take more during the night. With sleeping pills I couldn't do that and I didn't get very many hours of sleep. Sleeping pills also caused me to be very tired the next day.

I've tried the cpap machine twice with various masks and I couldn't handle using it due to my neck injury.

I also try to help my sleep with what I eat and drink during the day. If I consume something I shouldn't it greatly affects my sleep. Also if I overdo it affects my sleep. I have to keep my life in balance without dwelling on it.

Good luck to you.
Fibromyalgia, CFS, MCS, scoleosis, herniated disks, spinal stenosis, osteoarthritis, sjorgens, sleep apnea, asthma, allergies, headaches. On a regiment of different supplements including sleep supplements. I eat nutritiously and do not eat foods I'm sensitive to and ever since a back injury triggered my fibromyalgia, I have been doing prescribed stretches twice daily.

Post Edited (almost medfree) : 4/21/2013 5:55:03 AM (GMT-6)


bluejeans
Regular Member


Date Joined Dec 2012
Total Posts : 266
   Posted 4/21/2013 9:06 PM (GMT -7)   
I used to never have trouble sleeping, head hit the pillow and I was asleep and slept throught the night.
Unfortunately alon with my ailments came insomia and sleep apnea. I sleep with a cpap, however mine in not severe. In order to sleep I take lunesta. Its the only thing thaqt works that I can take right now.
I have a lot of pain with my lower back and hips during the night and am waking and changing positions throught the night right now. I have had to get up anf come to my recliner several nights because my hips won't take anymore. I know when I do this I am taking a chance with the cpap, but sometimes the pain overrides it.

Wish you luck.
Post lymphoma, Spleenectomy, Lupus, Sjorgrens, RA, Anti-phosphoid syndrome, Fibromyalgia, GERD, short bowel syndrome, scolisis, arthritis of spine, spondylosis, splondylesis, DDD,DJD

Faith in God, the love of my family and a good attitude keeps me going.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12522
   Posted 4/21/2013 9:24 PM (GMT -7)   
Blue jeans, you can't move your CPAP when you get in your chair?
I have a small table by my recliner to use when I want to snooze and need my Cpap.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Pelagicdancer
Regular Member


Date Joined Jan 2013
Total Posts : 65
   Posted 4/22/2013 12:47 PM (GMT -7)   
Thanks for your replies everyone :)

couchtater said...
As for treating it now you may want to sleep on an incline to keep your throat open while you sleep. Don't sleep on your back either.

Unfortunately I don't think this really helps for central sleep apnea, because it's not a problem with the airway closing (like obstructive sleep apnea) but a problem with the brain not telling the body to breathe properly. I don't notice a difference with different sleep positions or extra pillows etc. I have an unrestful sleep and wake up feeling groggy and fatigued.

So far my doctor's only suggestion while I wait for the sleep study is sleeping pills, which she didn't seem concerned about being a problem in low doses, but I haven't found them very effective and have tried several. I might get a bit more light sleep or fall asleep a bit faster (which isn't really the problem) if I take something but I don't really feel any less exhausted during the day. Sigh, I wish I could speed up the process for the sleep study! Going crazy :(

I do the "sleep hygiene" stuff already, don't drink caffeine or alcohol, try to get to bed and get up at the same time, etc.

I always wake up early now and can't get back to sleep and feel awful in the mornings - anyone else experience that?

Post Edited (Pelagicdancer) : 4/22/2013 1:11:28 PM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12522
   Posted 4/22/2013 5:46 PM (GMT -7)   
Sorry, I forgot you said yours was CSA. Fibro stole that away....lol!
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

applevenus
Veteran Member


Date Joined Aug 2011
Total Posts : 934
   Posted 4/24/2013 5:43 PM (GMT -7)   
I had to argue (nicely) with my rheumy that I needed a sleep study done. Yes I got diagnosed with sleep apnea. I use a CPAP. I was hopeful that it would decrease my pain. It hasn't. BUT - my cognitive ability is much better! I do often say the wrong word, but I no longer have instances where I got in the car and forgot where I was going. Those were scary.
47F, Fibromyalgia, Vitamin D deficiency, Sleep Apnea/CPAP therapy, Tinnitus (ringing ears), allergies/multiple chemical sensitivities, possible Chronic Fatigue & occasional IBS symptoms. Poster child. lol
I take a bunch of vitamins daily. Flexeril on an as needed basis.

almost medfree
Veteran Member


Date Joined Jan 2004
Total Posts : 1783
   Posted 4/25/2013 3:54 AM (GMT -7)   
Pelagic,

I never heard of central sleep apnea. My question to you is, do you also have issues with forgetting to breathe during the day? It seems I'm often reminding myself to breathe during the day. Maybe because the muscles around my lungs are tight?
Fibromyalgia, CFS, MCS, scoleosis, herniated disks, spinal stenosis, osteoarthritis, sjorgens, sleep apnea, asthma, allergies, headaches. On a regiment of different supplements including sleep supplements. I eat nutritiously and do not eat foods I'm sensitive to and ever since a back injury triggered my fibromyalgia, I have been doing prescribed stretches twice daily.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2822
   Posted 4/25/2013 10:04 PM (GMT -7)   
Pelagic,

I have both obstructive sleep apena and central sleep apena. My OSA was DX in 2007 and I used my CPAP machine everyday until June of 2011.

My then 18 yr old daughter found me unresponsive and making a terrible sound. Her Dad looked at me and knew I was in trouble. 911 was called and I was rushed to the nearest ER. I ended up on life up support for a week. When hubby arrived at the ER he was told they weren't sure I'd pull thru the night.

Long story short I did, but we found out at that point I have central sleep apena. I had to get a new machine called a VPAP. I can NEVER fall asleep w/o my mask on and my machine running. I have fallen asleep and have been rushed to the ER with repeat issues. When I fall asleep w/o my mask/machine within about 15 minutes I begin to make my death rattle as my hubby calls it. Hubby has stated I'm not dying on his watch, so he never sleeps anywhere but next to me. When he went home for Thanksgiving, my now 20 yr old daughter has to sleep with me. I sometimes pull my mask off in the night, fall asleep and stop breathing etc.

I would really push your Dr to get you in to get your study. Yes, patients who have OSA can potentially die from not using their machines, but patients with CSA the possibility of death is VERY VERY high w/o a machine.

If I can answer any questions please let me know. Wishing you luck with your study. Push them so that you can get proper treatment ASAP.

Hugs,
Barbara

Pelagicdancer
Regular Member


Date Joined Jan 2013
Total Posts : 65
   Posted 4/27/2013 3:59 PM (GMT -7)   
Wow, that's a scary story, sorry to hear that Barbara <3

Do you folks who have sleep apnea find that treatment like CPAP or VPAP helped your symptoms of fatigue and pain? (glad to hear you cognition has improved applevenus!)

Sadly, it's not really up to my doctor how soon I get the sleep study, she's already referred me which I think is all she can really do. I live in Canada and so there is a long waiting list. I pushed for ASAP and was considered lucky to get my initial consultation at the sleep clinic in just 3 weeks (yeah, doesn't sound fast to me but they wanted 5-6 wks!) and then it may be another 1-4 months wait time to get the actual sleep study done. Hopefully it won't actually be that long!

So I haven't actually been diagnosed with central sleep apnea, it's just a suspicion on the part of me and my doctor. Due to things like:
- I never feel rested
- I feel sick and groggy in the mornings
- I wake up many times during the night
- I often feel like my breathing stops during the day or while trying to fall asleep (*so yes to almost medfree)
- I used an at home sleep-monitor which tells you how much time was spent in each sleep stage and awake, and it said I was getting little to no slow-wave (deep) sleep and waking briefly 20 times a night
- various symptoms like chest pains and night sweats

The reasons my Dr thinks it's not likely to be obstructive sleep apnea are:
- I don't snore
- I am not overweight
- I don't gasp for breath

There is definitely something seriously wrong with my sleep, I am really hoping they can figure it out and that it's treatable.

EDIT: I think anyone with fibro or chronic fatigue should be given a sleep study!! I guess they can be hard to get because they are expensive, but it's at least twice as expensive in health care if someone has undiagnosed sleep apnea compared to if they are treated.

Post Edited (Pelagicdancer) : 4/27/2013 4:06:28 PM (GMT-6)

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